1. < Polymyalgia Rheumatica (PMR)

Two weeks in, frightened by meds, PMR and COVID Booster Shot

Posted by hurtinunit @hurtinunit, Oct 27, 2022

Hi! I’m 59 and WAS perfectly healthy and very active up until 2 months ago. Gosh, am I happy to have found you all. I was diagnosed (sort of) two weeks ago and was started on 25mg of Prednisone which provided great relief but I have many worries about side effects. I’m now down to 10mg and although still in less pain than before the meds, during the nigh the pain gradually returns. I take the meds in the morning and a few hours later I’m better again. Is this normal for PMR? Also, I’ve had 3 COVID vaccines and am due for the next booster but yesterday I happened to stumble upon some research on the correlation between the COVID booster shots and sudden onset PMR. Is this what’s happened to me?? I’m not anti-vax by any stretch of the imagination, just a little (lot) concerned. By the way, I’m seeing an internist next week to confirm diagnosis and discuss the way forward. Any advice, recommendations or help you can provide is welcome.

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carrie1979 | @carrie1979 | Nov 4, 2022

After my last Covid Omicron booster, I felt achy and flu like. My joints were very sore and it was hard to walk. I went for a Rheumatologist. He diagnosed me with PMR. I was put on 15 mg a day of prednisone.

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1 reply
hurtinunit | @hurtinunit | Nov 5, 2022
In reply to @cookiegirl1944 "I was diagnosed a few months ago with PMR. The doctor put me on 30 mg..." + (show)
@cookiegirl1944

I was diagnosed a few months ago with PMR. The doctor put me on 30 mg ( offered me to start out at 25 mg) @nd then gradually reduced the rate/dose. I am afraid your provider has not followed standard guidelines accepted for reduction. Moving from 25 mg to 10 as quickly as you are doing increases your rate of relapse plus does not meet the standard of care. Now relapses can happen even if the provider uses the guidelines but the risk is lower. I suggest you google the dosing guidelines, read them and then make an appointment with your provider right away. Let me know how things go. I still have pain and stiffness and not sure how to get rid of it. Where is your pain?

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Hi! I’ve seen the specialist/internist and he has confirmed the diagnosis and also feels that the taper was a bit hasty. That said, since I’m doing so well on the 10mg he has decided to keep me there for a while and taper down much more slowly. I have very little pain now other than the shoulders that are sensitive in the morning. Definitely nothing even remotely close to the initial pain.

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vandyms1974 | @vandyms1974 | Nov 6, 2022

I agree tapering slowly is the key. 5 mgs daily controls my pain, but I have popping and creaking in my bones or connective tissue when I move in bed like rolling over. Does anyone else experience that? I am concerned there is damage caused by the disease or prednisone. I have been on low dose pred since April of this year.

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3 replies
411344076 | @411344076 | Nov 7, 2022
In reply to @vandyms1974 "I agree tapering slowly is the key. 5 mgs daily controls my pain, but I have..." + (show)
@vandyms1974

I agree tapering slowly is the key. 5 mgs daily controls my pain, but I have popping and creaking in my bones or connective tissue when I move in bed like rolling over. Does anyone else experience that? I am concerned there is damage caused by the disease or prednisone. I have been on low dose pred since April of this year.

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I would be interested in reading a reply from the group as I am experiencing a similar problem. I started prednisone one year ago and am currently taking 2 mgs daily. This does not totally eliminate the pain but make life's tasks manageable. About two weeks ago my knees started cracking and popping when rising from a sitting to standing position. I share your concern about damage caused by the disease or prednisone and will discuss this with my doctor at the next visit.

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linda7 | @linda7 | Nov 7, 2022
In reply to @vandyms1974 "I agree tapering slowly is the key. 5 mgs daily controls my pain, but I have..." + (show)
@vandyms1974

I agree tapering slowly is the key. 5 mgs daily controls my pain, but I have popping and creaking in my bones or connective tissue when I move in bed like rolling over. Does anyone else experience that? I am concerned there is damage caused by the disease or prednisone. I have been on low dose pred since April of this year.

Jump to this post

I have had a lot of cracking and popping lately in my shoulders and shoulder blades. I have been on prednisone for 15 months, down to 7.5 mg. This is my fourth attempt to get below 8 mg. This is the part of my body that has been most affected by the PMR all along. I'm not sure what it means as it could be a lot of things. If I'm finally improving the muscles may be loosening up and causing all the joints to move differently. It could be a result of muscle weakness and tightness from moving less over many months due to pain. Inflammation could be getting worse as I decrease the prednisone and that is causing the muscles to work differently. I'm not really worried about joint damage, just waiting to see what happens as I drop the prednisone. I am getting a DEXA scan done next month to see what the prednisone has done to my bones. I had a previous scan in 2019 for comparison.

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hurtinunit | @hurtinunit | Nov 8, 2022
In reply to @cookiegirl1944 "I was diagnosed a few months ago with PMR. The doctor put me on 30 mg..." + (show)
@cookiegirl1944

I was diagnosed a few months ago with PMR. The doctor put me on 30 mg ( offered me to start out at 25 mg) @nd then gradually reduced the rate/dose. I am afraid your provider has not followed standard guidelines accepted for reduction. Moving from 25 mg to 10 as quickly as you are doing increases your rate of relapse plus does not meet the standard of care. Now relapses can happen even if the provider uses the guidelines but the risk is lower. I suggest you google the dosing guidelines, read them and then make an appointment with your provider right away. Let me know how things go. I still have pain and stiffness and not sure how to get rid of it. Where is your pain?

Jump to this post

The pain now is mostly in the upper arm and right shoulder. It only in the morning and is gone within an hour or so after I take my pred.

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flymetothemoon | @flymetothemoon | Nov 8, 2022
In reply to @virginiaj "I’m on my 3rd bout of PMR, the first when I was 57. I was on..." + (show)
@virginiaj

I’m on my 3rd bout of PMR, the first when I was 57. I was on prednisone for 2 years at that time and had a 12-year remission. It recurred in my early 70’s and I tried to reduce prednisone in 10 months, however, it started up a few months later and currently on 2 mg and approaching 3 years. When I was on larger doses (10), I split the dose between morning and evening, now take the 2 mg dose in the evening. My PMR started several months before Covid. I have had all the Covid vaccines, flu shots, etc, without it getting worse. My first bout of PMR started the day after I did a 5-mile run/walk at a faster pace than usual. I was stiff the next day and it got progressively worse until I was diagnosed. It is a mystery disease in many ways. At this point, I am almost 76, on 2 mg of prednisone and will soon start decreasing to 1.5. Not as worried on the small dose

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I also had a similar situation to yours. My PMR started before vaccine, however, there is some chance that the vaccines may prolong it. I am on second taper after 3 years, down to 3 mg. If my blood tests in 2 months still show elevation in Sed Rate and CRP I will begin Methotrexate as continue tapering off Prednisone. Monitoring bones with exercise, diet and Reclast Infusions. Had my 2 vaccines and 1 booster. Not getting a second one or the new vaccine. Some doctors pushing that having only being tested on 8 mice. Who knows, but my husband is a doctor and we all follow his lead for now. Feel better.

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1 reply
shalleenkm | @shalleenkm55 | Nov 8, 2022
In reply to @gingerraspiller "I am 64, active, healthy. I believe my PMR was triggered by my 4th Covid vaccine...." + (show)
@gingerraspiller

I am 64, active, healthy. I believe my PMR was triggered by my 4th Covid vaccine. I had 3 Pfizer shots but the 4th shot was Moderna. My symptoms started right after the Moderna shot. I started at 40 mg. Currently at 15 mg.
I am not getting any vaccines while I have PMR. May not get anymore Covid vaccines ever.

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Yes I agree! I will NOT be getting any more Covid Boosters ever. My PMR started after the second vaccine and because I was not aware that it was the culprit to my symptoms, I did get the 3rd shot booster last October. Then the pain and weakness really kicked in. Prednisone taper should not go down quickly. Rather as others have commented, needs to be a slow gradual step down.

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gingerraspiller | @gingerraspiller | Nov 8, 2022

I met with my doctor today for my annual exam. When we discussed the possibility of me getting the latest Covid shot (bivariant for omicron) we agreed that I should NOT get the Covid booster. I need to leave my immune system alone - it doesn't need to be "boosted" by a vaccine. We agreed that I need to get off prednisone and get PMR behind me before I consider getting any more Covid shots. He said, "if you get Covid, you have had 4 shots and may get sick but you should not end up in the hospital or worse." The Covid booster is more risky for me right now. I am so glad we agree on this!!!

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cookiegirl1944 | @cookiegirl1944 | Nov 8, 2022
In reply to @carrie1979 "After my last Covid Omicron booster, I felt achy and flu like. My joints were very..." + (show)
@carrie1979

After my last Covid Omicron booster, I felt achy and flu like. My joints were very sore and it was hard to walk. I went for a Rheumatologist. He diagnosed me with PMR. I was put on 15 mg a day of prednisone.

Jump to this post

How long are you to be on 15 mg?

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